罕见癌症的抗争面临着众多挑战，包括漏诊或误诊、缺乏信息和诊断工具、样本不足和资金不足。然而，许多癌症生物学方面的进步，例如认识到存在肿瘤抑制基因，都是来自于研究明确定义的、尽管罕见但是有代表性的癌症。纤维薄层肝细胞癌（FLC）是一种典型的致命肝癌，主要影响青少年和年轻成人。FLC既罕见（500万分之一），又难以诊断。由于数据极少，人们不知道FLC是否是一种癌症，还是一组具有相似表型的癌症，或者它是否是遗传的或体细胞突变的结果。通过十年的工作经历，揭示了这些问题的答案以及在我们抗击罕见癌症方面的步骤和失误的路线图。© 2023. Springer Nature Limited.

The fight against rare cancers faces myriad challenges, including missed or wrong diagnoses, lack of information and diagnostic tools, too few samples and too little funding. Yet many advances in cancer biology, such as the realization that there are tumour suppressor genes, have come from studying well-defined, albeit rare, cancers. Fibrolamellar hepatocellular carcinoma (FLC), a typically lethal liver cancer, mainly affects adolescents and young adults. FLC is both rare, 1 in 5 million, and problematic to diagnose. From the paucity of data, it was not known whether FLC was one cancer or a collection with similar phenotypes, or whether it was genetically inherited or the result of a somatic mutation. A personal journey through a decade of work reveals answers to these questions and a road map of steps and missteps in our fight against a rare cancer.© 2023. Springer Nature Limited.